Today marks a day that changed my life forever. 3 years ago today my daughter, Avery June DeWitt (sis, sissy, buggy, bug) was diagnosed with ITP- Immune Thrombocytopenic Purpura. Her platelets were reading only 10,000 on the scale where we sit between 250,000-450,000 and dropped the next day to 6,000. Platelets are what clot our blood, help us not to bruise when simply touched or squeezed, helps stop the bleeding when we are cut or poked. Without them the outcome can be very dangerous and scary! We are very fortunate to have only had to have an Ivig transfusion 1 time to help boost her platelets. Although, her lab work, which we stay on top of has been a roller coaster of high counts and low counts- we are blessed she had no major bleeding issues so we have been able to avoid further treatment by keeping her as safe as possible ( this is really trying actually if you know her) and doing an EXTREME amount of research. ITP is idiopathic. They know its autoimmune but believe a virus brings it on in children. After the virus takes its course they believe the immune system will reprogram after 6-12 months. After Averys did not I wanted answers! I sought out different doctors and found out that she had H Pylori- a bacterial infection that can cause peptic ulcers and stomach cancer. Through trial and error with different diet changes we have found living a gluten & dairy free lifestyle for Avery is most definitely necessary for her to be healthy and comfortable. H pylori eats at the stomach lining which produces stomach acid without it you cant digest food. Dairy is highly inflammatory and gluten is one of the hardest grains for the stomach to digest. All these sites, groups, people along the way that Ive come across and asked for advice have taught me so much and to not take no for an answer just because the person telling you went to Yale or wrote a book of hematology. It was these doctors that told me her tummy aches had nothing to do with ITP and just give her miralax and keep her hydrated. When a mom sees her baby in pain and broken you better believe she is gonna move mountains to get to the bottom of it! I honestly believe that she had the bacterial infection for a long time ( the tummy issues are charted on her records well before her ITP diagnosis) and that is the culprit of the onset of her ITP ( you wouldnt believe how dumbfounded all her doctors were when I came to them with the separate diagnosis I didnt receive from them and a Stanford nurse admitted they used to tie the two together) Now that her stomach is rid of it, we keep her safe as can be, restricted diet so she doesnt have digestion issues, and she seems to stay pretty bruise free. Since I dont have a magical device that tells me her numbers daily ( can someone get on inventing that please) I rely on her bruises to tell me what her numbers are. Less bruises = higher numbers (happy mommy) last counts were AMAZINGLY 139,000!!! And Im praying that with her tummy on the mend she is on the road to remission! This has been a journey and a half but I wouldnt change it one bit! 3 years ago today I would of never thought I was capable of handling all the things weve had to endure ( I talk like its been hardest on me when this kid is the one who was getting poked every week for 5 months) and its showed me what Im made of, what she is made of, what WE are made of as a family. Well today we go to Lucille Packard and meet with her hematologist and we will discuss again whats going on with miss Avery. She will get a poke and they will check her platelets and I will continue to pray to hear those sweet words of remission! Today is a day that changed my life forever, today is a day I will never forget.
Posted on: Fri, 28 Mar 2014 13:12:56 +0000
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